I’m writing a lot and publishing little at the moment because I’m bogged down in a great deal of research. I am writing on a number of subjects related to accessibility issues for disabled people, some of which impact me directly, others of which do not impact me directly.
I know that within this community there are a great many people with highly specific knowledge bases, and this diary is meant to ask people who would be willing to help me find highly specific information if they would comment here (or send me a private message) so that I may inquire of you at some point in the future.
Please clue me in to your area(s) of expertise being offered up. “Hi, I’m Beelzebub, and I have a Ph.D in Fire and a Masters in Brimstone,” for example.
But before I begin…..
Please do not give me any advice. I am NOT looking for advice about my hand tremors and such. I’m a highly capable and adaptive disabled individual and am not seeking any sort of advice on how to solve my own problems.
(If it feels rude that I said that, please understand that disabled people are constantly told, “Why don’t you just do x?” by people who have never thought about a subject before and will never think about it again. We’re an accidental repository for the world’s stupidity sometimes. A lot of times we start out trying to discuss something, and we’re inundated with, “You should take my cousin’s yoga class” and then weeks later told we’re “not trying” when we fail to show up, or we’re told about someone else “with hand tremors who doesn’t have that problem at all,” and our problem is summarily dismissed before we even get a chance to point out that we weren’t asking for help in the first place. We were merely going to ask you to pass the ketchup.
Don’t do that here—or to any person who tells you they are disabled, or have depression, anxiety, or a chronic illness. Please. Don’t speak. Listen.)
Second preface: I have a great deal of professional experience in some of these areas. I hold several masters degrees, but relevant here I hold a Masters in Education and was a credentialed special education teacher. (I haven’t taught for 13 years now.) In addition to my own 5+ decades of living experience as a disabled person, from childhood through today, I’ve had a lifetime of experience of working directly with people with all sorts of disabilities, and years of working with Assistive and Adaptive Technology for my students.
I can make Ray Kurzweil jokes that are so specific only about 8 people get them. (I’m saving those for a post about his work in Assistive Technology, so don’t ask. :) )
My purpose in trying to write on a variety of subjects is to take a deep dive into areas that I don’t believe “we” as a society are properly addressing (as regards accessibility in consumer products, public spaces, etc.) and to attempt to apply standards of Universal Design and other accessibility guidance to suggest courses of action (policy and such) that will help make our world more accessible for more people. That’s a long way off, though, hence the research, and the request for people willing to occasionally correspond with me and offer some guidance toward the answers I seek.
I need to know about things I never thought I’d have to know about… from how infections adhere or don’t adhere to a variety of plastics…. to a need to understand differences between biodegradable and non-biodegradable plastic… to understanding capacitive screens in smartphones, tablets, kiosks, and business machines… to understanding solid state technology as used in laptop trackpads… to specific information about various trades, including the grocery industry and gas stations.
(I’ve worked in both those fields, but decades and decades and good fucking God decades ago now.)
My list goes on and on because nearly everything in life is inaccessible to one or another disabled person. While I’ll be starting with my own accessibility issues—since I understand them better than anyone else—I’m also going to be addressing other accessibility battles currently being waged, too.
My own body/mind story… part one
My brain suffered anoxia when I was born and I have certain physical and neurological truths as a result. I have evolved my own way, just as you have evolved your own way; except the world has been designed for some of us more than others. I’m in the latter category more often than not, but in many ways I’m in the former. Throughout my life I’ve had a number of disabling conditions that remain persistent—my eyesight, although it’s getting worse with age—and others which were transitory, such as my need for braces, crutches, and/or wheelchair during periods of childhood.
I had developmental delays through early childhood and those impacted me differently throughout my life.
Like Einstein I had language delays; unlike Einstein, I did not end up with the cool hair.
I couldn’t hold my head up for a long-ass time, I’m told by people who knew me as a toddler. And so on, these developmental delays were observed to be more or less “gone” by first grade, but in retrospect, with my adult knowledge and professional experience, I understand that they continued beyond that. They did not interfere with my ability to get an education, though, so any talk of “special education” for me was met with a strong, stigma-influenced “no” at the time.
Whether it’s related to this brain event at birth or not—I don’t think so, but don’t know—my eyesight has always been…. see here’s where I could use an ophthalmologist for the right word, so I’ll use…. fucked. Corrective lenses have helped me out—I didn’t get those until first grade—but if I had my left eye’s eyesight in both eyes I would have had a far different life. (I can drive and do most things, but don’t throw a baseball at me. My depth perception is wonky. Etc.)
I’ve had muscular irregularities (with regards to self-control) and motor difficulties. For a while in chlidhood I wore the very same god-awful metal leg braces as Forrest Gump and sometimes required a wheelchair and other times crutches and other walking aides, but after the age of 16 have been more fully mobile (with some limitations).
The only way I could ever dance was to dance like nobody was looking, but in my time, I did dance, even in public, critics be damned.
I’ve had depression and anxiety throughout my life, and was once diagnosed with some OCD behaviors. (It was never a full diagnosis, but I have specific obsessive-compulsive behaviors and manage myself accordingly.)
I wish to note: My anxiety and those OCD behaviors have made me an excellent student and employee pretty much my whole life. There is hellishness associated with both, but I’ve used them well.
That’s the first part of my story.
My own body/mind story… part two
Around the age of 40 I was beaten in the head 14 times by a 220 pound young man, a student who was momentarily angry, but then his own out-of-control body made him continue.
(I worked with students who were a danger to themselves or others, and all students have a right to a Free And Public Education in the Least Restrictive Environment. He was one of my students. I was called to come out afterschool because he had begun to behave dangerously on the school bus. They evacuated all these students onto the side of a hot, Los Angeles street. I rode out on another bus, which took them home, then got onto the bus with the driver to try to get him home.
He had complex motor tics which would repeat once he began them. He also had OCD and was trying to touch a female bus driver, which I had to prevent. There wasn’t a second staff member to help me, so I was unable to use the procedures which would have protected all of us from harm and had to put myself in his way in the bus’ middle aisle. He hit me once out of anger, and then it all just happened after that until I was able to restrain his two arms over his chest and his body was able to stop repeating the same motions.
I was looking into his eyes the whole time and he was going through more hell than me at the time, I can tell you. It’s a terrible feeling when your body does something you don’t want it to do, but I imagine having it hurt other living beings that way is perhaps the worst.)
As a result of this I suffered a severe concussion and I have a second Traumatic Brain Injury (TBI—the first one being my birth event, the anoxia) which has allowed me to continue evolving in different and unique ways.
I actually came out of that quite well, considering all the different parts of the brain that could have sustained injury, and—this isn’t inspirational bullshit so don’t start playing Sarah McLaughlin—there are many ways in which I’m grateful that it happened.
If I could change it, I would. I would not suffer this TBI; however, I did, and I’m me, and there’s no turning back, and there are some ways in which this TBI has improved me.
The bad includes aphasia, certain auditory processing difficulties, memory uptake problems (and the limited loss of certain nouns and for a time many people’s names were “not there” for me, even though I’d known them for years), amygdala damage that has me way too fucking anxious all the time (and is not responsive to medication so don’t advise me to take medication), an increase in some of those OCD behaviors (which I also manage so it becomes an asset, though), hand tremors, increased eyesight difficulities, especially light sensitivities, horrific cluster headaches (which act and reach intensity levels similar to migraines), low energy and high fatigue, and hand tremors. I may have forgotten a few effects—but that’s not a result of the TBI, that’’s just “normal.”
That’s more or less my body/mind story, which I shared because it’s relevant to my ask.
My Ask (Roughly Speaking)
I need help from people who may have expertise in a variety of different areas, including the technilogical interfaces for smartphones, tablets, and kiosk technology (so the capacitive screens and other internal parts that make up the technological interface), AND the human physiological part of the interface. Human-Technical Interfaces is one broad area that I find myself having to explore at a depth I never imagined I would need to do.
Specifically, I have hand tremors and eyesight problems which interfere with certain technological usage, and I’m looking for Kos members who may be WILLING to occasionally help me find highly specific information and/or particular research. So that would include people in the tech industry, but also medical doctors, including neurologists, or occupational therapists, or…. ?
Not to diagnose me or give me personal medical advice—I have that—and not to offer me tech support—we all know that doesn’t exist/I’m KIDDING—but to perhaps help me figure out where to find research—or even form more intelligent questions.
I don’t want any of you to do the work for me, but I’d love to be able to write someone and ask for help. I also may not be able to pay for access to all types of research, but if you have access and can LEGALLY share with me a pdf of some particular research, that may also be helpful.
As one example right now: I need to better understand changes in Apple trackpads and Apple watches and such and would love someone to direct me toward basic explanatory information (if it exists) about solid state technology. And I need to better understand all touch interfaces (smartphones, tablets, ATMs, and so on).
My reason is that I can’t always use these interfaces and all the devices are moving in that direction. So while I’d love it if someone would speak to me like a five year old child and explain all of that to me, I know that’s not realistic, so better yet would be to find good, detailed information that spells it out for me. A basic primer.
I don’t know what I’m looking for in these “schematics” yet. I’m just trying to understand how they work, how they are supposed to respond to people’s fingers and hands, and then figure out why they don’t work for me and others.
I’m not going to design a better product, of course. My mission will be to then write about these problems, suggest solutions for universal design that can make current consumer products more accessible, if I’m able, or at least describe the problems so well that I begin a useful dialogue with others among you here who then may be able to help me offer more refined solutions down the line. (My dream would be to write something that makes people inside the industry go—we can solve that—and then begin to do so. I also dream, still, of acrobatic sex with John Stamos, so….)
I’m deathly afraid that I won’t be able to use any of the interfaces—audio, visual, touch—in a few years—and I know that’s exactly the opposite of what most people in the tech industry, hell the world, believe is happening. Tablets help MANY people access the digital world who could not do so before; therefore, the fact that tablets and other touch screens actually create OBSTACLES to accessibility in OTHER people is being drowned out in the public arena.
(My theory is that a lot of these issues get easily dismissed as being problems “only old people” get. Back in 2011 or so I read an article about study about smart phones and the percentages of people in different age groups for whom the screen doesn’t respond to their hand motions, and of course it increased with age. To me this is a failure of Universal Design. That article stated that these had been internal studies the major smartphone developers were using, and the problem they found was that the capacitive screens that worked with more people also made the phones heavier—and that’s a turnoff to everybody else. I can’t find that article, and my memories of the details may be off—but I’m looking for THAT, for instance.)
That’s one subject area example.
Plastics
But I’m also looking into experts in all things plastic, for example, from the types of materials that are used in hospital tubes in which infectious diseases have begun to propigate, posing a risk for people with chronic illnesses who often have to go into hospitals, to disposable plastic straws (an invention originally developed as adaptive technology specifically for people in hospitals and then disabled people—by today’s parlance), to reusable plastic materials….. To biodegradable plastic materials…. All things plastic, so people with experience in the plastics industry, but also of course, people in medical fields who may be able to offer me insights and direction in some very particular questions as they relate to differnt plastic materials, especially infections to allergies associated with various materials.
Grocery Stores
People with past or present grocery store management experience would be appreciated. I am losing a great deal of my independence in grocery stores as (at least my stores in this area) are starting to have periods of time when they don’t have cashiers, and I can’t use self-checkout machines, or smartphones—the only two options available before 9AM at the only store that has the specific items I need (I’ve spent decades searching, please trust me).
My store manager has informed me, “You have a right to a cashier at any time,” which is nice and all, but not all his employees know that, and either way I have to announce myself as having a disability, which is humiliating, and since I have “invisible disabilities,” both employees and other customers who overheard have argued with me the past 9 out of 10 times I’ve attempted to assert that right.
(So now I only go shopping on my lunch break.)
I’m reading the ADA guidelines on kiosks, and I’ve read some trade publications that have informed me that my store chain’s management is trying to get 70% of all their sales to be self-checkout in order to reduce labor costs.
One piece I’m developing is exploring THAT—the way that the drive to reduce labor costs by throttling checkout lines has lead to ME having to spend more time in grocery store lines over the past two years, until finally two months ago they began to go without cashiers before 9AM, which ushered in that period of humiliation… and now I’m shopping during my lunch break.
But beyond these issues, there will be more.
My point is this: If you have expertise in some particular areas, and are willing to entertain occasional questions so you can guide me toward research, or help me find the answers, please either Private Message me and I’ll make a list, or go ahead and comment here. (And then you may not hear from me for a long time. I’m having a hard time in life right now, so I only get a little writing in a day.)
If you do wish to share links regarding any of those particular areas mentioned in this piece, please do so, but NOT to your cousin’s yoga class, please. (Trackpads/solid state—what is it/infection issues with different types of plastics/smartphone and other touch interfaces/good grocery store trade magazines and public sources where I can search for information.)
Thank You For All The Fish
I appreciate your attention to this. Again, I won’t ask you to do my research, but I don’t even know where to look for some of the things I’m looking for, so some guidance will be helpful.
PS: I’m going to be going to bed soon, and then won’t be able to respond to comments until possibly after work Pacific Time, so after 7PM PT/10PM ET. I’m publishing this in hopes that it will be up when the East Coast awakens and be seen. I usually publish on weekends so I can interact with people, but I’m guessing that this will get more eyeballs by publishing on a weekday. Except I can’t interact.
So please forgive my absense from comments. (I may be able to check in, but not if I’m too busy tomorrow, but I think it’s not likely.)
I’ll leave you with an allegorical representation of how it feels to be constantly misunderstood.